Can't sleep

[user_2]

It's so good to see there are people who understand and share what I feel. I am so frustrated trying to making others understand what I have.

[cpaOBE]

I don't know what levels B12 should be, but will try to find out when I see my GP next week. Mine was lower than normal and I have been taking a low dose supliment of B12, which I think is helping. I also take 50 mgms Tramadol and 0.088mgms Pramipexole before going to bed and that seems to be working for me most of the time. Hope this is helpful.

[Hidden]

DON'T TRY - I have spoken to people and they have asked about the RLS and I tell them about the agony and the inability to sleep, etc only to have them say,

"I get it sometimes when I'm in the car - I like to move my legs a bit"

F**K me but its hardly the same! People just don't seem to understand RLS, maybe the name has something to do with it. I wonder if it was called "Life Destroying Painful Legs Syndrome would people take more heed?

[Ldune in reply to Hidden]

It takes over your life never to rest. I totally understand.

[Spudellen in reply to Hidden]

Raffs, that is a perfect description.

[SherrieMaui in reply to Hidden]

Whenever I talk to my sister about this problem with my RLS lack of sleep medications side effects, she says to me oh I get that sometimes I just deal with it and it goes away. I'm laughing right now at the insanity of family thinking oh yeah I have that too, and I don't have to much of a problem with it so you shouldn't either.

[Pippins2]

TOTALLY impossible to describe !

[angelbird]

Agree most people do not understand I too have been awakened 3 nights on the run now am pacing the living room creeping round in the dark, while my hub sleeps oblivious I get hot water bottle to put on my legs while I sit tired out on the couch, eventualy they settle enough for me to go back to bed, and the he wonders why I cant wake up in the morning ....wondering what or if that B12 suppliment may help its worth a try .. to stop this nightly ritual

[Hidden in reply to angelbird]

I've read on here about someone taking B12 so have started again myself, (legs are being real sh1ts at the minute).

anglebird, if you can a good hot bath works wonders, (temporarily) for the legs better than the how water bottle imho.

I've developed ME this past couple of years and it is a nightmare when the legs are at me as I haven't the energy to pace so end up rolling about in pain, which although not great is better than rolling about in agony).

I ask people have they every done any running/exercise and if they have I ask have they ever done it to the point of collapse where their legs were on fire with pain. If they say yes I tell them that's similar to the pain I feel most of the time when the legs are active. I ask them how do they feel the next day and do their legs ache from the exercise and if they say yes I tell them that's how my legs are after spending the night restless.

AND if they can understand that I tell them imagine having that all over your body, (my RLS is unfortunately RBS restless BODY syndrome with my back and arms effected to) with no hope of it getting better and throw in DECADES of poor sleep and functioning. And if they understand that they are lying dogs!

[SherrieMaui in reply to Hidden]

I have RLS that goes from the base of my back up my back, through my body I don't even know if it's in my legs or not. Second neurolhogist I went to said to me NO it would be in your legs not in your torso. But I remember reading online people do get it in their bodies. Talk about family not understanding, when the darn doctor tells you you're wrong.

[angelbird]

Hi Raffs

unfurtunately we dont have a bath my hub disabled so we have walk in shower, wow u sound like u realy do suffer ... it knocks my legs in to inconsiquential ... the trouble is people cant see any injury or take rls seriously because majority of people think it,s all in the mind and a previous partner just used to shout and say just stop moving thought I was doing it on purpose to annoy , and joe public just look at u in bewilderment if u try to explain ...

[Pippins2 in reply to angelbird]

Well angelbird I am glad he is your ex partner ! If my hubby shouted at me to be be still during a RLS episode I would punch his lights out! Lol x

[Hidden in reply to angelbird]

Shower is nearly as good.

Yeah, I used to think I had it bad now I long for the days when it was only my legs. It would be a walk in the park

[funnyfennel]

Oh yes, its sometimes not worth trying to explain. I find holidays can only last 4 days as being away from my routine, with extra stimulation prevents any sleep.....Ragged, I need to return home...

[maesllan5]

I have given up trying to explain RLS, even my family basically ignore me and they watched Mother suffered for years. Thank goodness for this site, thank you all very very much XXX

[angelbird]

yes it,s a funny thing with no outwards symptoms apart from the tiredness and frustration sometimes, each night more apprehensive about going to bed because that,s it,s usual place to raise it,s ugly head !! it lul,s you in to a false sense of maybe I will let you sleep tonight but then again maybe .... I more than likely won,t ..

[SuperMNew]

I totally understand everyone's comments. I've suffered for 40 years with RLS, with the last 6 months being progressively worse. I've tried: calcium/magnesium; iron in the form of Ferrochel (can't OD on this kind of iron); walking it off (HA! we all know how far that goes); hot showers (no lasting effects); Epsom salt (soaking my feet); now I'm experimenting with natural DOPAMINE. My doctor gave me ropinirole, which he says my body "sees" as dopamine, and the ropinirole completely knocks out all the shaking, and I can at least get decent sleep. However, it's effects are wearing thin and I have to take more to get the same amount of relief. So, my goal is to get off prescription meds.

So, now I am experimenting with natural dopa in the form of Mucuna Pruriens, which is a natural remedy for Parkinsons (and RLS) that has been used in India for centuries. It is working wonders, but I have to figure out how to sleep when taking it. It is literally like drinking a couple cups of coffee--keeps me wide awake, but my symptoms are completely gone. Anyone have ideas about sleeping through what seems like a caffeine high?

[Junebrad]

Unless you have this terrible thing you can not explain it to anyone, they would not believe you. I wish there was another name for it because it sounds as though you just have to move to make it go away believe me its more than that, as fellow sufferers know only to well.